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Forget Me Not

As I skip along my healing path, being present, living in the moment (yes, I have been reading The Power of Now, and yes, I am a healing cliché), I know I shouldn’t have checked, that there was nothing to be gained by knowing. But… well, I have no good reason, I just got curious: it’s been nearly six months since I have been well enough to see any friends or family (well, apart from my husband, obviously, or that would just be weird). And, as I knew would be the case, knowing this has not helped me in any way. But, too late, I know.

I have missed birthday lunches with my girlfriends. I have missed Friday evening drinks and loud laughing – probably too loud for others close by – with friends as we let in the weekend fun. I have missed weekends away. I have missed family celebrations.

It’s not unusual for me to miss out. Over the last nine years, my social attendance record could easily have earned me detention, with its hit and miss status. But this time is different. This time it’s not so much hit and miss, as just miss and miss.

In some ways, I’ve got used to spending so much time on my own, enjoying the solitude, needing the space to rest without any pressure, enjoying the peace and inward reflection this time is allowing me (oh yeah, the healing clichés just keep on coming; wait for the next post, when I talk about my spiritual journey…). But in other ways it has been painful. I am sad that I have only met my beautiful niece for half an hour, even though she is now seven months old. I am sad that I wasn’t there for my Grandad’s 90th birthday celebrations. I am sad that I missed the girls’ lunch – I organised! – for my good friend’s 40th. I am sad I missed a date at a super posh restaurant with some of my favourite people. I am sad that I didn’t get to meet my friend for champagne to celebrate her exciting promotion.

CFS, and its annoying ways, has inevitably affected all my relationships over the years, but in some way I managed to hold on. Even if I wasn’t able to always be there, I could be there some of the time, which was a small way of tending to friendships, of giving them the attention they need to flourish. But this time there is no nurturing, no holding on. I just have to trust that once I am well enough again, there will still be a space for me at the girls’ lunch table; still a glass of wine waiting for me with the Friday five o’clock group; still an invitation sent my way from time to time. With our mutual friends, I’ve got Mike doing the tending, encouraging him to go to everything, even if I can’t. Going on our behalf, keeping my space warm, talking about me a lot – reminding everyone how wonderful I am (a husband’s work is never done). And it’s different with family, isn’t it? They have to take you back, what with all that unconditional love and everything. (Right, Mum?)

I try to keep in touch with everyone by text, to stay connected with people, to know what’s going on in people’s lives, to talk about ‘normal’ stuff, to laugh. But even texting can be a lot of energy for me. Yes.

It’s difficult, I know, for people to understand my situation. I think perhaps you only truly understand the impact of chronic illness if you have been touched by it yourself, or someone close to you has. And friends are used to me being unwell, with this strange, misunderstood illness. I’m not sure people understand that this time is different, that this is a serious relapse. They know I’ve cancelled on them, but that’s not unusual, perhaps they don’t realise I’ve cancelled on everyone.

And, you know how it is, some of us are just better at empathy than others; some people simply don’t know what to say. People are busy too, weeks pass quickly in their hectic lives, whereas here time takes on a different dimension. I don’t expect – or need – all of my friends to understand. I am sure there are many parts of their lives that I don’t get – like that whole nappy changing, sleepless night, thing. But I am so grateful for those who do take the time to check in with me and make me smile with their messages. The friend who always makes me laugh with her detailed threats of what she is going to do to the God of Energy for his misbehaving ways. My mum who has polished her texting skills, as she knows it’s the only way to keep in touch with me. The friend who wanted to send round the Glamour Police when I hadn’t washed my hair for six days. The photos my brother sends me of my gorgeous niece. The friend who has been through something similar and always knows the right thing to say. The letter from my Nanna, sharing all her news (who at 87, put the texting and emailing generation to shame). And my online friends, who have been just wonderful, with their thoughtful, sweet and entertaining messages.

As I think about my relationships, and my current miss and miss status, yet another lesson is vying for my attention (the lessons, they are just so generous, giving and giving and giving) about letting go of my ‘people pleasing’ habits, which seem to be a part of me. Going to social occasions, when I wasn’t really well enough, has been one of the reasons I am in my current mess – the desire to do the right thing, not wanting to let people down, not knowing what to say if I needed to leave early, wanting to be part of things. And I know this is part of a deeper insecurity of wanting – needing – to be liked and accepted. But this time, I have no choice but to let go, I’m just not well enough to go around ‘pleasing’, even if I want to. I have to trust that people understand my absence, accept me as I am, CFS and all, and will still be there on the other side.

I know in my heart that my friends will not disappear, that I am only an energy boost away from a coffee, or a lunch, or a glass of wine. But the reality is that after nine years of playing a part-time role in people’s lives, friendships simply aren’t as close as they used to be, as I would like them to be. This isn’t just a six month absence, this is a six month absence on top of a chequered attendance rate. And there is something that happens to the balance of friendships in this situation. Whilst my life has these social pauses, theirs, of course, are carrying on, and they have lots of other people in their lives, people they spend time with. Not seeing me isn’t leaving a hole, however amazing I am (very, of course). And inevitably a small connection – a text, or meeting for a coffee – means much more to me than it does to them. None of this is anyone’s fault, just the reality of living with a chronic illness – and I’m not sure there is a fix for this (getting better would help, and I’m working on that. Again!).

In many ways the isolation is not the hardest part of all of this – feeling pretty unwell most of the time is. But before you start feeling too sorry for me, I feel it is only right to point out, that amidst all of this, I have somehow managed a trip to France (including the Monaco Grand Prix, darling) and a trip to the Shetland Islands. You know us, nothing gets in the way of our travels. There was a lot of lying down involved, but I am happy to report beds are comfy in France and Scotland too. And my wonderfully supportive husband did lots of running round after me, so I could use my limited, and oh so precious, energy for nice things. And there were moments, moments of delicious, all-consuming joy: walking along the Nice Promenade; watching Jenson fly past; a French and Japanese fusion meal; a complementary upgrade to a suite; an Art Deco museum; meeting Shetland ponies; taking in dramatic coastal views; cooing at puffins. Moments I know many people in my situation don’t get. Moments were, briefly, CFS was not the main event. Moments of living. And when it’s just Mike and I there is no pressure, CFS is the boss, and we let it lead the way. If I need to rest I simply do. There is no schedule, no expectation, just us doing our best to make the most of our situation.

Then it happened, somewhere between starting and finishing this post (I can only write for about five or ten minutes a day, so a blog post is quite the project) the boss was kind and gave me a teeny shift in energy, and I was well enough for my brother and his wife to bring my niece to see us. It was only a short visit, but what an absolutely perfect way to break my social fast: squidgy cuddles with the gorgeous Anabelle.

And until I am well enough for my next social encounter, I can always carry on ordering things from Amazon – I don’t need – so the postman has to knock on my door. Or wait until I can see a neighbour in the car park, I can ‘bump into’, before I take the rubbish out. Or chat away with the Sainsbury’s checkout person, like a lonely old lady, annoying everyone in the queue behind me. There is always a way, people, always.

Okay, my lovelies, it’s been great to be here, hope all is just fabulous with you. I’m thinking if I start my next post straight away, I could see you again in, ooh, about two months. But so worth waiting for, eh…

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19 thoughts on “Forget Me Not”

I loved this post- very poignant and funny. I’m so sorry you are having a relapse, but I wanted to point out the silver linings: walking in Nice, taking the rubbish out, being in Sainsbury’s, able to shop and chat, eating restaurant food… CFS may be our boss, but look what you still can do! 🙂

The CFS has actually been being nice to me! 🙂 I wrote about it in my last blog post, but my energy has been good! I went bowling the other night and didnt die! Still trying to get a lot of sleep and pace but doing good!